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by sleepdancer2
Sun Apr 15, 2018 5:33 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Light Bulb Moment Regarding Advising Iron
Replies: 1
Views: 234

Light Bulb Moment Regarding Advising Iron

A discussion today caused me to rethink my ever-ready advice to check one's ferritin level and take iron to get it up. Not once did it cross my mind to include a disclaimer. A 60 yo acquaintance with MSA, or Multiple Systems Atrophy, was just diagnosed with Thalassemia. It is a hereditary blood diso...
by sleepdancer2
Mon Apr 09, 2018 6:46 am
Forum: Just Joined?
Topic: Just joined
Replies: 18
Views: 688

Re: Just joined

Hi. Glad you found your way here. Some of the people here are so very informed on the options for treatment and generous in sharing. Agreeing with all those expressing concern over your dosage of medication. When people are on a low dose, stopping may not be a problem. But at your dose, I'd recommen...
by sleepdancer2
Mon Mar 12, 2018 4:28 am
Forum: General Topics: RLS/WED
Topic: Medication Side Effect Statistics
Replies: 11
Views: 530

Re: Medication Side Effect Statistics

I've always been fearful of strong meds so have tried to avoid opioids. Shoot, I took one dose of a muscle relaxer and the feeling it gave me scared me so I didn't take any more. However, the hellish years I spent augmenting on dopamine meds with none of my doctors figuring it out, and the torture o...
by sleepdancer2
Fri Mar 09, 2018 5:42 am
Forum: Just Joined?
Topic: Toddler with possible RLS
Replies: 11
Views: 559

Re: Toddler with possible RLS

I am so sorry to hear your child is going through this - that's got to be so hard on you. I would encourage you to seek more than one perspective on managing your child's symptoms. There is an advantage to having a pediatric specialist such as a neurologist, also an advantage to having a sleep speci...
by sleepdancer2
Sun Jan 21, 2018 5:40 am
Forum: Just Joined?
Topic: Not sure if this is RLS or not
Replies: 19
Views: 1171

Re: Not sure if this is RLS or not

My first thought is to wonder if you are on any meds that this could be a side effect of. And if you've had any blood tests to see if you have any deficiencies in anything pertinent to muscle and/or nerve function.
by sleepdancer2
Mon Dec 04, 2017 8:20 pm
Forum: Physical Treatments
Topic: Latest on TENS Unit Use for Nighttime Symptoms
Replies: 42
Views: 17339

Re: Latest on TENS Unit Use for Nighttime Symptoms

My first TENS Unit prescribed by the doctor for low back pain was an Empi brand. Next one was a freebie from an online "friend" on a CPAP forum. Don't remember the brand. Current one is a Tens 7000 that I spotted on Craigslist for 10 bucks. I have seen no difference in their effectiveness ...
by sleepdancer2
Thu Nov 30, 2017 2:11 pm
Forum: Physical Treatments
Topic: Latest on TENS Unit Use for Nighttime Symptoms
Replies: 42
Views: 17339

Re: Latest on TENS Unit Use for Nighttime Symptoms

Badnights, your comments are interesting. Always been fascinated by this neuro stuff. I hope you're right about having rewired myself. It's certainly not been a quick fix. I remember when my mom had a stroke years ago, the doctors wanted to cut her therapy off because there's usually not many gains ...
by sleepdancer2
Tue Nov 28, 2017 5:54 pm
Forum: Everything Else...just no RLS/WED!
Topic: Is it Only Me ?
Replies: 33
Views: 2556

Re: Is it Only Me ?

Your sensitivity to the suggested changes is understandable to me. I find myself pretty emotional at little things that may not have been such a big deal if there weren't already underlying concerns about how things have been going in the relationship. I'd like to tell you to just be open and say ex...
by sleepdancer2
Tue Nov 28, 2017 5:41 pm
Forum: Physical Treatments
Topic: Latest on TENS Unit Use for Nighttime Symptoms
Replies: 42
Views: 17339

Re: Latest on TENS Unit Use - Update

I think I'm seeing an interesting trend. Didn't want to speak too soon, as I know this PLMD stuff ebbs and flows in intensity, but in all these years, it has never not been an issue. After about 7 years being off meds for my legs and using a TENS only for treatment that has given acceptable relief, ...
by sleepdancer2
Tue Nov 21, 2017 12:04 pm
Forum: Prescription Medications
Topic: Two very different doctors' visits
Replies: 61
Views: 4037

Re: Two very different doctors' visits

I spent a few years on Sinemet as the first line of treatment for PLMD back in 1998. I augmented but the doctors didn't recognize it for so long. I did learn a lot about how to work with the med for more predictable results. Unfortunately it's been so long ago I've forgotten much of it, but I'll sha...
by sleepdancer2
Mon Nov 06, 2017 10:43 am
Forum: Prescription Medications
Topic: First night on oxycontin
Replies: 8
Views: 713

Re: First night on oxycontin

I think videoing yourself will be worth the effort so you can know what you're working with. My home video was so revealing that just for fun I posted it on YouTube. Question about the sleep study - were you wearing your CPAP machine during the study when the doc didn't think your numbers were enoug...
by sleepdancer2
Thu Nov 02, 2017 9:12 am
Forum: Just Joined?
Topic: New to Site; hello to all
Replies: 53
Views: 4071

Re: New to Site; hello to all

Oh my - so much you're dealing with, so much of it I can relate to. I remember being unable to work and waiting in line at charity food pantries and just being grateful to have something - anything - to eat. About the supplements your former doctor recommended, is there any chance magnesium and vita...
by sleepdancer2
Wed Oct 04, 2017 10:44 am
Forum: General Topics: RLS/WED
Topic: How expensive is treatment for RLS in the U.S.?
Replies: 5
Views: 895

Re: How expensive is treatment for RLS in the U.S.?

As an American, it seems to me our views are widely varied and many of our views regarding the role of government fall along a spectrum. I personally came from a background strong on self reliance and responsibilty, but with a heart for sacrificing to help those less fortunate. I really don't think ...
by sleepdancer2
Wed Oct 04, 2017 10:07 am
Forum: Prescription Medications
Topic: 5 days on Mirapex, can I stop cold turkey?
Replies: 5
Views: 606

Re: 5 days on Mirapex, can I stop cold turkey?

I am not a medical professional, just a patient who has used this med. I tend to err on the side of caution after a bad experience with ongoing neurological effects after stopping Mirapex cold turkey. BUT - it was after being at a high dose for a lot of years. My advice is nearly always to wean off ...
by sleepdancer2
Sat Sep 16, 2017 5:50 am
Forum: Augmentation
Topic: Getting off of Requip due to augmentation
Replies: 42
Views: 4686

Re: Getting off of Requip due to augmentation

I do hope your doctor stepped you down to a low dose before taking you off the med. At any rate, it's refreshing to hear of your doctor being open to learning. I may be an outlier, but once the augmentation and withdrawal period was over, I've been able to control my legs with a TENS Unit. Good luck...

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